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. 2019 Jun 20;6(1):98.
doi: 10.1038/s41597-019-0096-4.

Barriers to accessing public cancer genomic data

Katrina Learned  1 , Ann Durbin  2 , Robert Currie  2 , Ellen Towle Kephart  2 , Holly C Beale  2 , Lauren M Sanders  2 , Jacob Pfeil  2 , Theodore C Goldstein  2 , Sofie R Salama  2 , David Haussler  2 , Olena Morozova Vaske  2 , Isabel M Bjork  3
Affiliations

Barriers to accessing public cancer genomic data

Katrina Learned et al. Sci Data. .

Abstract

Although increasingly recognized as critical to genomic research, genomic data sharing is hindered by an absence of standards regarding timing, patient privacy, use agreement standards, and data characterization and quality. Only after months of identifying, permissioning for use, committing to terms restricting use and sharing, downloading, and assessing quality, is it possible to know whether or not a dataset can be used. In this paper, we evaluate the barriers to data sharing based on the Treehouse experience and offer recommendations for use agreement standards, data characterization and metadata standardization to enhance data sharing and outcomes for all pediatric cancer patients.

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Conflict of interest statement

The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Simplified and annotated recreation of the original table of datasets in EGA study, EGAS00001000256.
See this image and copyright information in PMC

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